Glu, part of T1D Exchange, works with a network of more than 70 clinics, a registry of data from more than 26,000 patients, and a sample repository that supports researchers from industry and academia. The T1D Exchange Clinic Registry bolsters the development of projects and programs in type 1 diabetes by helping researchers characterize individuals in the United States with T1D, conduct exploratory or hypothesis-generating analyses, and identify participants for future clinical studies. Participants range in age at the time of enrollment, from less than one year to 93, and have lived with T1D anywhere from less than one year to 79 years.
The goal of the Clinic Registry is to update key information from all participant medical records each year and target subsets with custom questions on an ongoing basis. These tactics are vital to maintaining a current and relevant view of diabetes management as treatments evolve.
We’re sharing some key findings, starting with the age of diagnosis:
“When were you diagnosed with type 1 diabetes?” is a common question. If you asked me I would say, “I was diagnosed when I was eight, when it was still called juvenile diabetes.” Every time I hear someone say their age at diagnosis, I can’t help but try and put myself in their shoes at that time. What were they thinking about the challenges to come?
It’s clear in the above graph from the T1D Exchange Clinic Registry that the majority of the individuals about 79.77% were diagnosed under the age of 16. You can find out this kind of information by using the T1D Discover Tool here.
The reason why I always try to put myself in the shoes of others when they talk about age of diagnosis is due to all the challenges I have faced in my 26 years living with type 1 diabetes. Those teenage and young adult years for me were difficult. As it would seem with this mean HbA1c by age group graphic, I am not alone. I can’t help but think of how I thought I was failing in my diabetes management because of increasing A1c numbers in those years and how alone I was. With this information at my fingertips now, I know I would have felt more comfortable in my early diabetes journey.
Do the results here surprise you at all? Did you think more or less people would be below the HbA1c targets set by the American Diabetes Association (ADA) for these age groups? I know personally I have been under and above these HbA1c targets my whole life, but never really put much thought into how many other people with diabetes were missing the target. I knew it was a lot, but had no idea the magnitude until seeing this. I’ll be honest—in my last visit with my endocrinologist, I didn’t meet my personal goal or the one set by the ADA. I had so many mixed emotions about that. I was upset, sad, alone, and felt like I had put in all this effort over the past few months for what? But you know what I was able to do? Because I am involved in the Diabetes Online Community and Glu, I was able to talk with many people who understood my disappointment and offered encouragement. With so many barriers to achieving such HbA1c targets, I am so thankful for the online connections I have made. I was able to express my feelings and get back on my feet and head in the right direction.
When my diabetes gets me down and out, when I feel like I am all alone with my diabetes challenges, like no one understands what it is like to be me, I look back into the diabetes online mirror and see myself and many faces saying, “We understand, we’ve been through it, too.”